Facing the diagnosis

Diagnosis of dementia

"We were diagnosed over two years ago but can still remember those first shattering feelings – shock, disbelief, fear, shame, feeling cut off… and feeling very alone. Your brain feels numb and you can’t take it all in ... . But take heart, these first terrible feelings really do pass. We know – we’ve been there." (Pat, James and Ian)

"I was shocked. Then I thought about all the plans I’d made for my retirement with my wife. I realised it would no longer be possible. Now, much later, I’m enjoying life with my wife but it’s different and I sometimes feel a bit bitter about it." (George)

A diagnosis of dementia is likely to affect not only the person with dementia but also their family, close friends, workmates and employer. Often it is the family and friends who first notice that something is wrong. The person with dementia is not always aware that there is any problem. For many people, it is a long awaited explanation after weeks, months or years of consultation and tests, whereas for others it may come as a complete shock.

Some people feel the need to be alone in order to gather their feelings. Others seek the support of family or close friends. Yet others prefer to submerge themselves in an activity or surround themselves with lots of people in an attempt to shut themselves off from the knowledge of the diagnosis. It is important to give yourself the time to settle down and adjust after getting the diagnosis. Regardless of whether you feel the need to be alone or in the company of other people, having a supportive social context can be particularly helpful. Unfortunately, not everyone has this. If this is the case for you, try to find out about voluntary associations so that you know there is someone to turn to, should you eventually feel the need. It is not uncommon for people to have a kind of “crisis” some time after receiving the diagnosis. This is often part of the process of learning to cope. It is important at this time that there is someone you can turn to. Access to information and advice is also very important at this stage.

Facing and accepting the diagnosis of dementia can be a lengthy process often accompanied by a range of emotions. This can vary from one person to the next but typically involves fear, terror, shame, guilt, anger, sadness, bitterness and despair. In addition, people may feel isolated and helpless. Of course, not everyone will experience these emotions. Just as some people will feel overwhelmed by their feelings, others will not notice a significant change. However, if you do experience different emotions, it is important to know that this is normal in the circumstances. There is no right and wrong reaction when faced with a diagnosis of dementia.

Some people divide emotions into those that are acceptable and those that are not. Some are afraid of strong emotions as they fear they may lose control or receive criticism from others. Mixed feelings can also be problematic. Emotions may be experienced at any time and people may jump from one to another. Sometimes you may have conflicting emotions such as feeling optimistic about the possible effects of medication whilst at the same time feeling utter despair about the changes that are occurring in your life.

Denial is sometimes used as a way to cope e.g. putting everything down to “normal aging” or “an incorrect diagnosis” or simply choosing to ignore the diagnosis. This kind of denial, which is sometimes used by carers as well as people with dementia, can serve as protection against a reality which is too hard to deal with at the time. In such cases, it is best to respect the person’s needs and be ready to support them should they eventually decide to address the issue.

For the person with dementia

Allow yourself to experience your feelings.

Allow yourself to grieve.

Consider meeting others who have the illness.

Please also refer to page 21 for information about coping strategies.

For the carer

People with dementia sometimes find it difficult to recognise or label their emotions, particularly if they are already experiencing difficulty finding words. If this is the case, you could perhaps help in the following ways:

Try to be sensitive to what the person may be feeling.

Reassure them and confirm that you are there for them whatever happens.

Pay attention to non-verbal signs of emotion.

Help the person to identify their emotions by commenting (at an appropriate time) on how you think they may be feeling e.g. by saying, “You look quite sad” or “You seem worried”.

Allow time for your comment to sink in and for the person to react.

If the response confirms your impression, acknowledge the feeling.

Telling someone that there is no need to feel sad or nothing to worry about doesn’t help as they are likely to think that you simply don’t understand how they feel or what they are going through.

Part of accepting the diagnosis is understanding that the person with dementia will change. He/she may sometimes behave differently or react in a way which seems out of character. This can be difficult to accept, particularly if you have known the person for a long time.

Try to remember that such changes are directly or indirectly caused by the disease.

Don’t blame the person with dementia.

Learn to accept changes whilst appreciating aspects of the person’s behaviour and character that are still familiar to you.